UMASS

Spiny: Thanks my CH friend. I think I might have found the issue that "may" have triggered my CH after 13 years. I'm still a smoker (I know I need to stop) It dawned on me that I changed from Parliament Lights to Marboro "Red Label" about the time my CH started again (one week later) I decided I really need to stop outright. I had a serious case of Bronchitis about 2-3 years ago & my doctor gave me Predisone & it worked within hours! It's done the same for me with my CH (day 5 now) I'll ask for a couple of refills when I visit my neruo. in a couple of weeks. I'm hoping that I go dormant again. From what I gather Predisone isn't the best for your body in general, hence the tapper. But...I'll take it if it get's me out of pain. Be well Spiny.

CH Father: I was blessed. The oxygen company guy knew about CH's. They gave me an M tank (& stand) with a regulator & the correct mask.My Blue Cross/Blue Shield of Mass. picked-up that tab! Showed me how to use it in detail. Here's the thing...(knock on wood) I think the tapered prednisone broke my cycle completely (I think) I'm loving it! Going back to my neurologist on 06/23 for a check-up! Life is good right now!

Thanks for the update. At least the doctors in Mass. are all 3+ months out for an appointment. Found one local that got me in within 10 days.

Spiny: Remember I'm semi-old. "Knucklehead" is kind of an old school term. Glad I could make you chuckle! Two days no CH. Fingers crossed. 02 will be delivered on Monday.

I'm new to these boards. I went into 13 years of remission. Then 4 weeks about they're back. The pain isn't anywhere near as bad near as in my younger years (i'm 51 now) You sound a lot like me. Started around 17-18 years old, then the worst was from my mid 20's-30's Sometimes some people "outgrow" them. I know where you're at & I feel for you. I've been reading this board since yesterday & I cannot stop. I need to be informed. Hang in there!

The one drug (for me) that completely stopped my CH was Sansert/Deseril. I never, ever received a Cluster once I took the medicine. But it's been discontinued for years now. It was the miracle drug for me. Damn shame.

BTW...Can anyone point me to the ClusterBuster Files? I can't seem to find it. Quick Edit: I'm a knucklehead. I found it.

CHfather & Spiny. Many thanks for your insight. The neurologist prescribed me O2 & a 30 day supply of prednisone. She want's to see if that helps. She mentioned that there might be a chance that the CH will withdraw again. She did bump-up my Verapamil to 960mg a day like CHFather mentioned. After I wrote this post (before seeing the doctor) I had one small CH that quickly went away. I haven't had one since (fingers crossed) She also mentioned that Sansert can be made by a compound company as a last resort. I'm just hoping that it's a "passing" episode & I'll be free again of the madness. I'll chime back & let you know how I make out. Thanks again for your help.

Hi All: I guess my subject line says it all. My name is Alex & I'm 51. I've been free of CH for about 13+ years. I'm was so very grateful for not having the pain anymore. Pure joy. Mine started for me when I was 17 or 18. The worse time in terms of the pain was from my mid- 20's to mid 30's, then the frequency started to taper down as the years progressed. By my late 30's they simply never came back. About 4 weeks ago...I felt the warning pain coming on (about 10-15 minutes for me), then I was back in the world of pain again. I've been taking Verapamil (240MG twice a day) for over 25 years. It seems to help, but when the CH decides to get completely unruly, it doesn't work. I remember years ago my doctor put me on the Amazing drug called Sansert/Deseril. It was the ONLY drug to would stop a CH dead in it's tracks. Come to find out the drug has been discontinued because of the possible fibrosis issue. I have an appointment tomorrow (Thursday 6/1) to see a neurologist. Two things I'm hoping for. A drug that out there to prevent them or (the best scenario) is the CH pack-up again & go away. As I get older my constitution isn't as strong as it was 20 years ago & it effects me even more now. Has anyone else had a serious hiatus (years) from CH & they came back? Thanks for listening everyone! Alex